Surfing

Just more evidence of an epic summer. The kid is a beach kid through and through. She has so much fun in the ocean. Getting up to standing and riding waves was the goal of the summer and she has loved every minute of it. 

Monkey bars

Years of hard work paying off. Ayden Jane has been working on being able to do the monkey bars for years. Seriously. She would have occasional success and get 4 or 5 bars... This is a long set of bars, 13 all the way across.  She has been working on them each day at school and apparently mastered them! She was so proud to show me.

Summer Swim - Season 1

So last summer we tried to teach Ayden Jane the backstroke.  She was convinced she could do it but honestly, she just moved her arms the same as you do for freestyle, only she was on her back.  As in, she was rotating her arms forward and as hard as we tried she just couldn't make her arms go in circles backwards for more than a turn or two.  It was pretty comical...

This summer Ayden Jane was a little bigger, a little stronger and a little more coordinated.  She worked on freestyle, learned the backstroke and is on her way to learning the breaststroke. 

Even more awesome is that Jen (PT) has been really impressed with Ayden Jane's gains overall since she has been swimming.  In fact, we are cutting back PT to once a month maintenance in the fall!!  That is a huge step as she has had Jen by her side weekly since she was 5 months old.  Jen taught her to crawl, walk, jump, climb, ride a bike .... so many things.  She has also kept a close eye on her scoliosis and helped reduce it from 23 degrees to straight!! She has managed orthotics and the crazy internally rotating hip and a host of other little things that she caught so early that she fixed them right up. Honestly, I am a bit nervous letting her go!!!

I have appreciated her approach to PT.  Once we hit the major developmental milestones, she made transitioning to community sports and activities the goal.  As the video of her swimming and the soccer season she had last spring attest to.  She is successfully participating in community based sports with her peers.

So glad she will keep us on as a consult and keep her eye that knows Ayden Jane so well on her once a month.  She has truly been amazing as a therapist and friend and never looked at Ayden Jane as a kiddo with limits.  Luckily, our girls are the same age and I will be able to cheer on her super star athletes and Ayden Jane will have a built in cheering section for whatever she does.

Brookfield Zoo

During out trip to Chicago we were very excited meet the family much responsible for the way that I feed Ayden Jane.  When Ayden Jane was diagnosed I was not satisfied with the nutritional guidance and a few other things about Ayden Jane's care.  Basically, her doctors were well meaning but I just was not comfortable with their recommendations so I searched out information from other parents dealing with syndrome.  I found that the information our local doctors were going on was sound, however, outdated.  It was a stressful process of stretching my brain to understand but the more that I researched and the more I tweaked things in AJ's diet, the more clear the answers became.

Lara has been a source of answers and advice and become a good friend but solely online.  We had never actually met in person!  We met at the zoo and the kids became fast friends.  Kian is delightful and the two of them had more energy than we did!  It was a bit of a race from exhibit to exhibit.  It is funny how quickly the kids became comfortable with each other just from sharing a similar diet.

I had a great time meeting Lara and her whole family.  Being able to just chat about things with brilliant minds (Lara and her husband LJ) and continue to attempt to understand what is going on inside these kiddos is wonderful.  I admit a bit overwhelming though!  It is easier to do by email when I can stop and look things up!

I also very much enjoyed being able to say thank you in person and have them enjoy Ayden Jane's success for an afternoon.  That may sound strange, but in a community of parents who have lived the PWS life we just naturally cheer each other's success.  I look to others for help and they give it so willingly.  They become part of our family in a way.  I am sometimes asked for help and I know that I instantly become attached to the families and rejoice at the successes of their children.  Ha, as I reread it, it sounds a little odd, but I guess it is one of the hidden blessing of the journey.

Spring Break

The fabulous news on Ayden Jane's back and the awesome time spent in Greenville was a great start to spring break.  The weather has been awesome since and Ayden Jane has already been boogie boarding and building sand castles.  The water is still way too cold for me but she does not even hesitate!

Around the house she likes to ride scooters and bikes and play on the trampoline.  The other day she wanted to ride her bike, but we remembered it is broken.  The back tire is flat and the chain keeps popping off.  Not a huge loss as it really is too small for her, but what to do next?  We have talked about buying her a new bike but it is always a little hard to know what size. 

We decided to get down an old bike that had been Noah's (and Mckenna's and a couple other kids).  It is bigger and even more striking, it is much heavier.  I cleaned it up, put down the seat, pumped up the tires and decided it was safe.  Ayden Jane was excited.  When she first took hold of it, she and the bike went tumbling over.  And I mean even before she got on!  The bulk of it was hard for her to hold and attempt to mount.  She struggled for a few minutes and I offered to help.  Her response to my offer, "Mom, just go back inside.  I'll figure it out."

So back inside I went.  When I couldn't stand it any longer I went out to check on her and she was not in sight.  Don't panic, that was a good sign.  She is allowed to ride down around the corner in the dead end cul-de-sac.  I hopped on the power wing to see how she was getting along.  She was struggling a bit to get started again but made it clear she had it under control. 

By the end of the day she was ready to venture across the neighborhood to play on the playground at her school.  What do you think?

 

Fun in Greenville

It was a crazy road trip.  Starting with a last minute change in Noah's schedule which made it possible for him to come along.  We picked him up on our way to Shriners.  After the appointment we checked into the hotel and Kayla came and picked up Noah and they headed off to Clemson for the evening.  We hung out and swam in the pool with the Spearman's and then Ayden Jane and I went back to 'Ellie's house' and had a sleep over.  It was very cute how excited the girls were and Gwyn and I had a chance to just talk.  You know, without the little ones needing something in the middle of every conversation.

 

 

The following day we went to the zoo and played on a great playground just outside the zoo.  Here a couple of videos of my kids being .... well, my kids.  Just enjoying hanging out together and being silly.

 

 

 



 

Look, No Training Wheels!

 

 

A while back Ayden Jane asked to have her training wheels off so she could learn to ride her bike on two wheels.  It must have been Sept. because she was determined she would learn when she turned six.  We worked on it a couple of days but she seemed really far from making it happen and was just nervous enough that she would not allow us to help her.  Ummmm.  In case your wondering, it is hard to teach yourself to ride a bike with zero help getting going.

 

After the few days the bike was left in the garage, training wheelless and lonely. 

 

Renewed interest in learning to ride came as the big trucks rolled in and paved our road!!  Seriously, it was like a holiday celebration here.  I texted Kayla and Noah because it was a 15 year dream come true!!!  They had hoped their whole childhood that the road would be paved and roller blading, hockey, skate boarding.... would all be awesome on our street.  I am thinking Christmas this year will include them reliving their childhood dream skating with Ayden Jane :)

 

So, today the weather was good, the road was paved ... It was time to give it another go.  In about 20 minutes she was riding solo.  (sort of)  Jen got her started and ran with her in case she needed to catch her.  It was wobbly but she did it!  One more thing that was supposed to be too hard ... ha!  Too hard?  It only took 20 min.  (yea, I know it will take a lot longer to perfect, but I am claiming this victory now)

Scooter Video

So, Ayden Jane spends a lot of time hanging out at HS and club sporting events.  Currently it is soccer season and for high school this means stadiums.  At our home field Ayden Jane feels quite at home and scooters and runs around like she owns the place.

Last game she took her scooter and found the handicap ramp a great place to ride.  She went down the ramp and then followed the side walk all the way to the end (probably 100yds) and then came back.  Over and over and over.  It is pretty amazing how good she is on that scooter!

A Little PT

This is a quick video of something Ayden Jane was doing in PT today.  She is working on this position on her horse and Jen was trying to get her to add some things to it.  She has one leg extended back and is lifting the opposite hand. (The high fives were just a fun way to get her to keep her hand up in the air)  Ayden Jane is balancing on a peanut ball, which is like an exercise ball only long.  I think it looked pretty hard!

This second one is to the side that is harder for her so her counting shortens and her leg is not up as high.  This was at the end of therapy so it definitely was a challenge!

My Monkey

Today Ayden Jane and Mrs. Jen did therapy at a local playground.  I missed the start on the video, but AJ started on the ladder and got herself going.  She was so proud to be able to do the side ways monkey bars!!!

So Far So Good

Well, I have increased Ayden Jane's supplements for a short while now. At this point the changes are that I am spreading out the dosage of B-12 into 2 doses.  The combination has added additional Folic Acid, B-6 and Biotin.  I think these are supporting the B-12 somehow.  (or just going back to spreading out the B-12 is helping)  I then added back the creatine.  After a few days of a little higher 'loading' dose, I have settled into a dose of 1/4 tsp. morning and 1/4 tsp. afternoon/evening.

So far, teachers report great days at school with Ayden Jane thinking quicker.

Today the ribose came and I gave her a dose of 1/4 tsp.  She did not have any issues with blood sugar drops so I will use the 1/4 tsp. twice daily (just like the creatine) and see how it goes!  I can honestly say I did not spread these things out well enough to give really definitive info on what helps what, but the results so far have been so much of a relief it is just hard to be patient.

Ayden Jane is thinking very quickly.  Mostly this creates hilarious things coming out of her mouth but sometimes it makes her hard to understand.  It is like her mind is suddenly faster and her mouth doesn't quite keep up.  It is the first time in a long time I have had to ask her to repeat things several times in a day.  I am guessing that it will even out.  If it doesn't I am okay with it because I love the fast thinking.

PT was postponed this week by Jen who needed to take care of her family.  I am excited to see what she thinks on Friday.  2 weeks ago, Ayden Jane was B-12 washed out and it was before I reintroduced creatine.  Jen was really worried about her and noticed definite decrease in motor planning and tone.  Since then we have 'walked the balance beam' and continually improved.

This video I took with my phone today.  Just figured all this lab/supplement/medical stuff gets boring so enjoy!

First Big Girl Bike Ride

Ayden Jane got a 'big girl bike' for Christmas.  She has been riding a cool little bike for some time so we knew she could pedal, but something about the bigger bike... She has been a little shy about trying to ride it, but when Mrs. Jen came today for PT it was time to hop on.

Here is the result!  Yep, it took about 2 minutes...

Wednesday

Ayden Jane is adjusting to my return to work, well for the most part. She does ask a lot of questions about what she is doing 'today' and what I am doing 'today'. She keeps close track of who is picking her up... Last Friday, at the end of my first week (okay, week with me working) she was exhausted and bailed on going to school. Instead she fell asleep for a bit in the morning and then we went to walmart to do some grocery shopping.

This week I worked Tue., then Wed. morning she balked at going to school. We went but were a little late. As we walked to the door AJ fell to pieces and started to tell me she had a headache and needed to go home. NEVER has she wanted to leave school. I think it was a bit of panic as we got to the door and they were all in circle... not the way it looks most days when she gets to school. I just took her down the hall and had her tell me the names of her friends. (their pictures were above their hooks) Then I told her if she did not feel well we could go home but we would be going to bed and I would have to call Jen (PT) and tell her AJ was too sick for her to come. Ayden Jane had gathered herself and she immediately told me she was not sick any more and she trooped off to class. Whew.

After school we came home and had soup and cleaned up a bit. Ayden Jane was... well I could call it goofy or I could call it difficult or I could even just call it down right disobedient. Mostly, I think she was just looking to get my attention. My full attention. Every second of my attention. Hmmm that working thing maybe? I chose the play into it and give her lots of extra silliness route and she came right around.

Jen came and Ayden Jane did awesome for her. Jen first got her up on the big exercise ball and worked some serious strength and balance stuff then she moved to some fine motor stuff. This video is AJ working on learning to cut. I don't think you can see it, but she was opening and closing her mouth along with the scissors. It was hilarious!

My Little Monkey

I have mentioned several times about how much Ayden Jane loves to climb. I think doing this is pretty amazing for any just turned 4 year old let alone one with PWS! She was so excited that she could do the whole thing all by herself, she must have gone through it 20 times in a row. Crazy kid.

Swimming Fun

Well, this pretty much sums up half of our summer. The other half has been at the beach! I will do my best to get some video of that as well.

In this clip, Ayden Jane is swimming away from Mckenna who is 'it'. It is AJ's version of sharks and minnows... Ayden Jane is so proud of the fact that she can swim in the 'deep deep' (9 ft.) that I think she wears everyone out swimming back and forth. It is too cute when all the kids are in playing games and she is so sure she is playing too.

Surfin'

Today, I spent at least a solid hour doing this!

It was hilarious as Ayden Jane rode the boogie board in she had a fan club watching her. The first 200 times she jumped up and down with excitement cheering for herself and with her fan club. (the fan club was a group of very nice ladies on vacation and just getting the biggest kick out of AJ) Gary came just at the end when he was placed on call for work so he managed to see the last few and catch this video. Yes, that's me in the water.

She Swings Herself!

Well, it is a big day for every parent. You know, the day where you no longer have to stand there and keep pushing. The day where you can sit on the bench and possibly carry on a conversation while your child swings. Freedom for us all!!!

Now on to pedaling and there will be no stopping the fun this summer.

Fun Pictures and a Video

First off, Happy Thanksgiving from St. Peter Lutheran School. The best little preschool around. They just love Ayden Jane for who she is, quirks and all. I chatted with a couple of mom's from there, something I just had not had a chance to do, and found that 2 or 3 others speak the language of therapy and doctors... The school is such a blessing.

The pictures are just a couple of AJ in her Turkey hat with all her friends at the thanksgiving feast.

They served chicken nuggets as 'turkey', a cornbread muffin which I swapped out for a grain free almond butter muffin, corn on the cob and green beans. We just opted out on the pumpkin pie, but most kids didn't eat it either!

Mckenna and Ayden Jane just doing their thing around the house. Mckenna is such a great big sister.

This one is from the Daddy Day a while back. Gary took the girls and found a fun jumpy house along the way.

This video we took real quick before we had to head to one practice or another. Ayden Jane is holding her hands like that so she doesn't lose her silly bands. (those things are beginning to drive me crazy) I will try to get lots more over the holidays.